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MS in all its glory

1…4647495152…65

Comments

  • #2402
    Nigel Fairservice
    Moderators, Regional Abroad Moderators Posts: 2,290 Mod ✭✭✭✭Nigel Fairservice


    Carrie6OD wrote: »
    Does stress affect your MS? I’m stressed to the max at the moment with the school return (teacher) and can barely put one foot in front of the other.

    My neurologist told me to avoid stress where I could. Easier said than done.


  • #2403
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Same as Nigel says, my Neurologist, and GP, who I trust implicitly (having been a patient in different guises for 25 years) both say to avoid stress. I would if I could ðŸ˜႒

    But I know 100% I am so much better when I can keep life on an even keel. We are all different but good quality sleep / rest or lack of same makes a huge difference for me. The problem of course is when I have too much in my head I don't sleep well. This of course stresses me out and sometimes I feel trapped in an ever decreasing circles etc etc .....

    The whole Covid thing was stressful including worry about my.Mam and Dad, who while very active are no spring chickens, and for a while early on in the lockdown we're not in a great place. This and other family related worries dont help. ( it4 am and I am online!)

    But in summary in my uneducated opinion stress doesn't help. For me though staying physically active and eating well helps, or at least it does in my opinion.


  • #2404
    cj maxx
    Registered Users, Registered Users 2 Posts: 14,568 ✭✭✭✭cj maxx


    I’ve been on Avonex since 2013 , and never really had problems with it, but my last 2 injections have been quite painful, also leaving my leg kind of stiff and sore. Anyone have the same experience with Avonex ?


  • #2405
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,505 Mod ✭✭✭✭byhookorbycrook


    It may not be the Avonex , but rather increased MS pain. Best to check with your neuro/nurse however.


  • #2406
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Not sure if this line of questioning is viewed as acceptable, or if viewed as inappropriate or offensive, in which case I apologise in advance, but i have no one to ask who might understand, and my Neuro just brushes me off, everytime I attempt to raise the question (despite charging €200 for a 5 minute consultation :( )

    Anyway Q is, one for the ladies. It may be entirely in my mind, but does anyone find their symptoms are worse, (in my case particularly fatigue and my annoying drop foot) at certain times of the month?


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  • #2407
    whatever76
    Registered Users Posts: 1,021 ✭✭✭whatever76


    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?


  • #2408
    Carrie6OD
    Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    MyAccount wrote: »
    Not sure if this line of questioning is viewed as acceptable, or if viewed as inappropriate or offensive, in which case I apologise in advance, but i have no one to ask who might understand, and my Neuro just brushes me off, everytime I attempt to raise the question (despite charging €200 for a 5 minute consultation :( )

    Anyway Q is, one for the ladies. It may be entirely in my mind, but does anyone find their symptoms are worse, (in my case particularly fatigue and my annoying drop foot) at certain times of the month?


    Yes! Absolutely 100%! My foot drop is chronic around that time of the month. I figured it out because I kept an MS symptom diary for 6 months and I could pinpoint the days when my walking was just shocking and it was at roughly the same time every month. My MS nurse (who is 10 times better than my Neuro) said that i wasn’t the first to say it to her. I have PPMS and so the walking is my biggest issue and I’ve to be extra careful around that time.


  • #2409
    Carrie6OD
    Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    whatever76 wrote: »
    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?

    I am not on tecfidera but there’s an instagram account MSMum3 who is on it and she speaks about it quite frequently


  • #2410
    whatever76
    Registered Users Posts: 1,021 ✭✭✭whatever76


    Carrie6OD wrote: »
    I am not on tecfidera but there’s an instagram account MSMum3 who is on it and she speaks about it quite frequently

    Oh thank you ! I will look her up ... much appreciated.:o


  • #2411
    Nigel Fairservice
    Moderators, Regional Abroad Moderators Posts: 2,290 Mod ✭✭✭✭Nigel Fairservice


    whatever76 wrote: »
    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?

    I'm on Tecfidera. The only side effects I have noticed are to do with my skin.

    My cheeks burn badly sometimes. It feels like when your cheeks go red from embarrassment but more intensely. That one isn't too uncomfortable.

    The medication also makes me feel like I'm wearing a scratchy wooly jumper all over my body at times, mostly at night. Clothes, bed sheets and duvet covers rubbing off my body set it off. It can last a few hours and can be sightly uncomfortable. I try to lie very still when it happens.

    These things only happen every so often, there's no rhythm to them at all. They're only minor issues I suppose. I happy with the medication overall.


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  • #2412
    whatever76
    Registered Users Posts: 1,021 ✭✭✭whatever76


    Nigel Fairservice wrote: »
    I'm on Tecfidera. The only side effects I have noticed are to do with my skin.

    My cheeks burn badly sometimes. It feels like when your cheeks go red from embarrassment but more intensely. That one isn't too uncomfortable.

    The medication also makes me feel like I'm wearing a scratchy wooly jumper all over my body at times, mostly at night. Clothes, bed sheets and duvet covers rubbing off my body set it off. It can last a few hours and can be sightly uncomfortable. I try to lie very still when it happens.

    These things only happen every so often, there's no rhythm to them at all. They're only minor issues I suppose. I happy with the medication overall.

    thank you Nigel - that's really helpful. I've been reading up on Flushing side effect so interesting in hearing peoples experience as it can vary so much. I am recently diagnosed :( so a bit overwhelmed at the minute.


  • #2413
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Carrie6OD wrote: »
    Yes! Absolutely 100%! My foot drop is chronic around that time of the month. I figured it out because I kept an MS symptom diary for 6 months and I could pinpoint the days when my walking was just shocking and it was at roughly the same time every month. My MS nurse (who is 10 times better than my Neuro) said that i wasn’t the first to say it to her. I have PPMS and so the walking is my biggest issue and I’ve to be extra careful around that time.

    Thanks Carrie,

    Not that is "good to hear" but as the Freddie Mercury song says, I was starting to think "I was going slightly mad". At the risk of again sounding mad, or selfish, not that I wish anything on anybody but, if this makes sense, I am glad I am not alone. I have RRMS, and while overall it's been a while since my last relapse, I have some residual issues, which I'm told are result of nerve damage, but which are by and large manageable most of the time, but which fluctuate, as said.

    I don't have a nurse, my Neuro (based in a well known Private Hospital/ Clinic in an affluent part of South Co Dublin), tells me they don't have one. You are not the first person I have heard praising their nurse. I might raise it again, as I sometimes am made to feel a nuisance by my Neuro, despite the fact that he charges handsomely for even the smallest of things. I had to pay €50 recently to get a stamp on my driving license renewal, despite the fact it took over 5 weeks to return the form!

    I would be interested to know if others have a nurse? That said my GP is fantastic but since March has been almost impossible to get hold of, but by all accounts that is the same across the board.


  • #2414
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    I am on Tecfidera too. I get that "flushing" but it is more like sunburn for me. My cheeks, neck, chest go red and feel sunburnt and my arms can get quite itchy. It happens badly enough for me to take an asprin a couple of times a week and might last for two hours. It is usually about 5 or 6 hours after I take the tablets, so lunch time or the middle of the night. I wouldn't wake up but if I wake with my daughter it can be hard to get back asleep.

    It is managing my MS really well. I am on it on and off (pregnancies) for three years and have really noticed an improvement in my day to day living so I can deal with the side effects.


  • #2415
    whatever76
    Registered Users Posts: 1,021 ✭✭✭whatever76


    Loveinapril wrote: »
    I am on Tecfidera too. I get that "flushing" but it is more like sunburn for me. My cheeks, neck, chest go red and feel sunburnt and my arms can get quite itchy. It happens badly enough for me to take an asprin a couple of times a week and might last for two hours. It is usually about 5 or 6 hours after I take the tablets, so lunch time or the middle of the night. I wouldn't wake up but if I wake with my daughter it can be hard to get back asleep.

    It is managing my MS really well. I am on it on and off (pregnancies) for three years and have really noticed an improvement in my day to day living so I can deal with the side effects.

    thanks LoveinApril for sharing .... the flushing side effect is one I most concerned about . Its great hearing experience the balance of how the medications is working v's living with the side effect. I am just recently diagnosed so doing as much research as I can before deciding . thx again !


  • #2416
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    whatever76 wrote: »
    thanks LoveinApril for sharing .... the flushing side effect is one I most concerned about . Its great hearing experience the balance of how the medications is working v's living with the side effect. I am just recently diagnosed so doing as much research as I can before deciding . thx again !

    The start is such a scary time so doing research is the best way to manage. When I moved off Copaxone, I was offered Tecfidera or Gilenya but I didn't like the idea of the Gilenya messing with my heart rate. Sensory skin issues seemed like the lesser of two evils.


  • #2417
    adam88
    Registered Users, Registered Users 2 Posts: 1,609 ✭✭✭adam88


    Loveinapril wrote: »
    The start is such a scary time so doing research is the best way to manage. When I moved off Copaxone, I was offered Tecfidera or Gilenya but I didn't like the idea of the Gilenya messing with my heart rate. Sensory skin issues seemed like the lesser of two evils.

    Gilenya only affects the heart rate for a few hours and even at that only barely for the vast majority of people


  • #2418
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    adam88 wrote: »
    Gilenya only affects the heart rate for a few hours and even at that only barely for the vast majority of people

    I was only the 2nd patient my nurse had seen whose heart rate remained totally unchanged :cool:


  • #2419
    adam88
    Registered Users, Registered Users 2 Posts: 1,609 ✭✭✭adam88


    Lollipops23 wrote: »
    I was only the 2nd patient my nurse had seen whose heart rate remained totally unchanged :cool:

    Mine went from 80 to 65-70. Not exactly alarming


  • #2420
    adam88
    Registered Users, Registered Users 2 Posts: 1,609 ✭✭✭adam88


    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.


  • #2421
    murfilein
    Registered Users Posts: 539 ✭✭✭murfilein


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    my ms also started with optic issues, but i never experienced eye pain, even with more severe relapses. yeah trying to get through to the neuro can be a PITA

    anyone has experience with sativex? is that even available in ireland?


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  • #2422
    Carrie6OD
    Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    Yes I have had that pain. Of course you’d should see the doctor if you’re concerned but mine went away after a day. I have PPMS though and don’t have flare ups so I’m not sure what it was but it’s as very uncomfortable at the time.


  • #2423
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    I had optic neuritis and it felt like I'd pulled a muscle in my eyeball or something! It went away by itself after about 2 weeks if memory serves.


  • #2424
    adam88
    Registered Users, Registered Users 2 Posts: 1,609 ✭✭✭adam88


    Lollipops23 wrote: »
    I had optic neuritis and it felt like I'd pulled a muscle in my eyeball or something! It went away by itself after about 2 weeks if memory serves.

    Pain and that feeling settled down today. If I’m tired it can be very bothersome


  • #2425
    Arllwysiad
    Registered Users Posts: 2 ✭Arllwysiad


    How does MS care 'work' in Ireland and how much does it cost? I'm an Irish citizen living in the UK but I'm getting increasingly horrified by this country and wonder if the NHS will even exist in a few years. I'm wondering if things would be better in Ireland.


  • #2426
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.


  • #2427
    Arllwysiad
    Registered Users Posts: 2 ✭Arllwysiad


    Loveinapril wrote: »
    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.
    Ah, sounds great! Thanks for your reply. It's good to know that MS won't be an issue if I have to escape the UK. :D


  • #2428
    Carrie6OD
    Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    Arllwysiad wrote: »
    Ah, sounds great! Thanks for your reply. It's good to know that MS won't be an issue if I have to escape the UK. :D

    I’ve had the same experience. I was in private care for about a year waiting to get into the public system and once I was in it has been extremely good and all free. Just today I had to email my MS nurse about a possible symptom and she was back to me with advice by return of email. The MS nurses are more valuable (to me) than the neurologist!


  • #2429
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    Carrie6OD wrote: »
    Just today I had to email my MS nurse about a possible symptom and she was back to me with advice by return of email. The MS nurses are more valuable (to me) than the neurologist!

    This is a good point. I am with Beaumont hospital and they have two MS nurses who are available by phone three mornings a week. I might be onto them about getting forms signed, organising prescriptions or appointments or like Carrie, just want to discuss a new possible symptom. I heard that you can take Asprin to combat side effects from one of my medications and I phoned to chat about it and they sent a prescription in the post the following day. They are great!


  • #2430
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    Loveinapril wrote: »
    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.

    It doesn't cover my anti anxiety meds? I've been on 50mg of sertraline for 3 years (absolute lifesaver) and it costs about a tenner a month.


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  • #2431
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    Lollipops23 wrote: »
    It doesn't cover my anti anxiety meds? I've been on 50mg of sertraline for 3 years (absolute lifesaver) and it costs about a tenner a month.

    It covers my Sertraline and has done for years. Have a chat with your pharmacist. I had a pharmacist who once showed me the list of medications covered in relation to MS and there were loads! It might require your hospital to prescribe them on the High Tech prescription but my GP has always done mine


  • #2432
    tinofapples
    Registered Users, Registered Users 2 Posts: 2,963 ✭✭✭tinofapples


    Lollipops23 wrote: »
    It doesn't cover my anti anxiety meds? I've been on 50mg of sertraline for 3 years (absolute lifesaver) and it costs about a tenner a month.

    Google "lti list j" for the list of medications offered on the Long Term Illness scheme.


  • #2433
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    tinofapples wrote: »
    Google "lti list j" for the list of medications offered on the Long Term Illness scheme.


    Obviously the public system works better than going private https://b-static.net/vbulletin/images/smilies/mad.png - my main medication is on that list (& dispensed free of charge in fairness) but there are a (small) number of other items on that approved list, my Neuro (who charges handsomely), has told me to use, to deal with side effects from the main medication, which based on his advice, I have buying over the counter at my own expense for some years - I need to get a new Neuro ! - I shudder to think about the thousands of €s I have spent on GP & Neuro consultations and over the counter meds

    As soon this Covid thing settles I will be finding a new GP and ASAP thereafter look for a referral to the Public Systemhttps://b-static.net/vbulletin/images/smilies/confused.png


  • #2434
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,505 Mod ✭✭✭✭byhookorbycrook


    LTI scheme is cutting back on meds/items allowed. I used to get the contraceptive pill through the scheme and it was refused last year.
    Neuro has suggested Sativex as an option for me, but it's not funded here yet, as far as I know. I've upped the Baclofen, so it that doesn't work, I may need to fund it privately. I funded Fampyra for a while for myself, but if something is proven to be beneficial and a neuro prescribes it, it should be funded.


  • #2435
    GreenRdBoy
    Registered Users Posts: 24 ✭GreenRdBoy


    Hi all. First time posting here but have learned so much from everyone's posts. So thank you.

    My son is 21 and diagnosed aged15. We have tried gilenya (good results for a while), tecfidera (didn't last long) and then lemtrada infusions (×2) . New lesions have shown up so consultant wants to start something new. Options seem to be ocrevus infusions or cladrebine/magenclad tablets.

    He has tolerated all treatments very well up to this point. Just wondering about other peoples experiences with either of these drugs. Basically, having difficulty deciding


  • #2436
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,505 Mod ✭✭✭✭byhookorbycrook


    I'm not able to comment first hand on those meds, GreenRdBoy, but I just wanted to say that it is great you have his back.


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  • #2437
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Hi all. I’m currently in limbo land having been told on Monday that an MRI I had last week has shown that there are lesions on my brain and cervical spine which suggest MS. I’ve been referred to the Beaumont just have to wait for an appointment now.
    And I just can’t believe the situation. I’m a 35 year old mam of an almost 2 year old, hoping to try for another baby soon and now I just feel like the life I’ve been planning for is gone. I’ve just been crying all day while my toddler looks at me so confused.
    I have been experiencing loss of sensation in my left leg on and off for a couple of years which I’ve been presuming was nerve compression of some kind. But I eventually went to the GP recently to see about getting a scan to see what’s going on. I did mention that I was worried about MS, but my GP didn’t think I should be. And she felt an MRI was unnecessary but referred for me anyway because I have quite bad health anxiety and she wanted me to have some peace of mind.
    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!


  • #2438
    Carrie6OD
    Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    GreenRdBoy wrote: »
    Hi all. First time posting here but have learned so much from everyone's posts. So thank you.

    My son is 21 and diagnosed aged15. We have tried gilenya (good results for a while), tecfidera (didn't last long) and then lemtrada infusions (×2) . New lesions have shown up so consultant wants to start something new. Options seem to be ocrevus infusions or cladrebine/magenclad tablets.

    He has tolerated all treatments very well up to this point. Just wondering about other peoples experiences with either of these drugs. Basically, having difficulty deciding

    I am on Ocrelizumab/ ocrevus. I’ve just completed my first year of it. I have had 3 infusions now and every time have had a mild reaction. So now the nurses give it to me at the slowest possible rate and I can tolerate it. Last time i was in hospital from 9am - 9pm! The IV therapy nurse is amazing. The first year you get 3 infusions then after that it is twice yearly. I can’t say I notice any difference but I have PPMS so my goal is to not deteriorate and I haven’t had any deterioration this year so I’m hoping it’s working. 15 is so young to be diagnosed. Poor guy. I hope he gets on a treatment that suits him soon.


  • #2439
    Loveinapril
    Registered Users, Registered Users 2 Posts: 2,340 ✭✭✭Loveinapril


    tiggerific wrote: »
    Hi all. I’m currently in limbo land having been told on Monday that an MRI I had last week has shown that there are lesions on my brain and cervical spine which suggest MS. I’ve been referred to the Beaumont just have to wait for an appointment now.
    And I just can’t believe the situation. I’m a 35 year old mam of an almost 2 year old, hoping to try for another baby soon and now I just feel like the life I’ve been planning for is gone. I’ve just been crying all day while my toddler looks at me so confused.
    I have been experiencing loss of sensation in my left leg on and off for a couple of years which I’ve been presuming was nerve compression of some kind. But I eventually went to the GP recently to see about getting a scan to see what’s going on. I did mention that I was worried about MS, but my GP didn’t think I should be. And she felt an MRI was unnecessary but referred for me anyway because I have quite bad health anxiety and she wanted me to have some peace of mind.
    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!

    Oh you poor, poor thing. Being diagnosed is a horrific time, there is a lot of unknown and I am seeing a lot of myself in your post. Please be kind to yourself. Let yourself feel scared but don't let it be all you are. Have you contacted the MS Society? Mary and Sean cover North Dublin and Mary in particular is lovely and supportive if you need to cry at someone who has knowledge of MS. My world fell apart when I was diagnosed ten years ago at 27, I was terrified. But I spent far too much time worrying about what night be. I suffer with anxiety too so I understand it is easier said than done but look into mindfulness and meditation. It helped me ground myself in the hear and now. For the most part, I am doing well. Since diagnosis, I have gotten married and have a 3 year old and a one year old. Don't let MS stop your life from happening x


  • #2440
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    tiggerific wrote: »
    I’ve just been crying all day while my toddler looks at me so confused.

    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!

    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.


  • #2441
    tinofapples
    Registered Users, Registered Users 2 Posts: 2,963 ✭✭✭tinofapples


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    I think this is some very solid advice, take your time to absorb this change to your life, as much time as you need ;)


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  • #2442
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Loveinapril wrote: »
    Oh you poor, poor thing. Being diagnosed is a horrific time, there is a lot of unknown and I am seeing a lot of myself in your post. Please be kind to yourself. Let yourself feel scared but don't let it be all you are. Have you contacted the MS Society? Mary and Sean cover North Dublin and Mary in particular is lovely and supportive if you need to cry at someone who has knowledge of MS. My world fell apart when I was diagnosed ten years ago at 27, I was terrified. But I spent far too much time worrying about what night be. I suffer with anxiety too so I understand it is easier said than done but look into mindfulness and meditation. It helped me ground myself in the hear and now. For the most part, I am doing well. Since diagnosis, I have gotten married and have a 3 year old and a one year old. Don't let MS stop your life from happening x


    Thank you so much! You’re words are very encouraging. And I’m glad you are well!
    Obviously at the minute I haven’t been officially diagnosed so I don’t know what’s ahead of me in regards to what type it is and treatment. The tiniest part of me wants to hope that they’re wrong but I’m a ‘worst case scenario’ person so I think that’s how I’ll approach it! A grim approach but that’s generally how I deal with things.
    I will check out the MS society too, thanks!


  • #2443
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    Thank you!
    I’m certainly wallowing anyway. This wait to see a neurologist is what I’m dreading. Maybe once I know for sure, I will be easier to comes to terms with.


  • #2444
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    tiggerific wrote: »
    Thank you!
    I’m certainly wallowing anyway. This wait to see a neurologist is what I’m dreading. Maybe once I know for sure, I will be easier to comes to terms with.

    I can imagine. For me that big question mark phase didn't happen as I was severe enough for them to know quickly what the problem was (that, and a family history of MS).

    I would encourage you to make a list of any and all questions you have going in- I've been doing that for each annual appointment, as it's very easy to forget.

    Also- and this is a biggie- RESIST THE URGE TO GOOGLE!!!!


  • #2445
    cj maxx
    Registered Users, Registered Users 2 Posts: 14,568 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    True , allow yourself time to take it in. . Myself, the day I was diagnosed I listened to a podcast that night which , totally unexpectedly, was about benzotropine and how it caused remylation in mice. Just as I thought it was the end that podcast lifted me .


  • #2446
    Nigel Fairservice
    Moderators, Regional Abroad Moderators Posts: 2,290 Mod ✭✭✭✭Nigel Fairservice


    cj maxx wrote: »
    True , allow yourself time to take it in. . Myself, the day I was diagnosed I listened to a podcast that night which , totally unexpectedly, was about benzotropine and how it caused remylation in mice. Just as I thought it was the end that podcast lifted me .

    The day I was diagnosed I went home from the hospital, made a sandwich, watched an episode of True Detective and went into work in the afternoon.

    They told me 18 months before the above that they thought I might have had MS. I was coming to the end of a 10 day hospital stay and nobody thought to tell me until I was sitting on the edge of my hospital bed waiting to get the final nod for discharge. The registrar came into the room, pulled the curtain, blurted out that what I experienced might be MS but they weren't sure and left abruptly. I was fairly stunned after that!

    I think I just got used to the idea of probably having MS over the 18 months and the little things I had experienced over the years before then like always being hot and having very itchy skin after showering/physical activity made sense with a MS diagnosis.


  • #2447
    whatever76
    Registered Users Posts: 1,021 ✭✭✭whatever76


    Recently diagnosed myself since early Oct . Had my first relapse over the summer . Inflammation was flagged in an MRI and GP advised me to go to A&E for further tests etc ... Anything sinister was ruled out at that point but had to get an LP to confirm MS diagnoses .. so it was confirmed in Oct. Still processing it TBH - I was of mindset at start to be positive that it could have been worse but now at moment I am wallowing a bit and feeling scared for whats ahead as I dont know how long its been developing and a few things I experienced last few years that prob all now down to MS. I learned about the MS HUG recently and I experienced that over a year ago but put it down to Anxiety /panic attack as went for Heart tests etc and all that was fine .. so I know hindsight it a great thing but just looking back now a few things are making sense.

    On plus side I must say there is huge support/resources out there and please do avail of these. I am trying not to think of whats ahead and just try and make lifestyle changes now to try and help keep it at bay and stop the progress. I have started Techfedera the last few weeks - so far so good although I have experienced the common flushing side effect ! Best of luck ... its ****e for sure


  • #2448
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

    Can't help but worry a little bit!


  • #2449
    echo beach
    Registered Users, Registered Users 2 Posts: 1,252 ✭✭✭echo beach


    Lollipops23 wrote: »
    My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

    Can't help but worry a little bit!
    I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

    Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.


  • #2450
    Lollipops23
    Registered Users, Registered Users 2 Posts: 5,420 ✭✭✭Lollipops23


    echo beach wrote: »
    I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

    Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.

    Yep have been on Gilenya since 3 months after diagnosis and it's worked like a charm. Zero lesion activity (bar shrinking) in 5 years.
    I hope they don't want to take me off it, I've never been on anything else.


  • #2451
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Lollipops23 wrote: »
    Yep have been on Gilenya since 3 months after diagnosis and it's worked like a charm. Zero lesion activity (bar shrinking) in 5 years.
    I hope they don't want to take me off it, I've never been on anything else.

    Hopefully it's nothing and they just want to do a review. I haven't seen my neuro in a few years either, just get an annual MRI and hear back that he's happy with it.
    I'm on Gilenya too and all good MS-wise, but have had some experience with skin cancer, which may be related - had a basal cell carcinoma removed 2 years ago and having another spot looked at soon. Neuro just said they would keep an eye on it and to stay on Gilenya, but if I start getting more of these things I will have to ask about changing meds. Which I really don't want to do, as Gilenya has kept my MS remarkably stable for the 6 years I've been on it...


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